Well 10 days and counting til Indiana. I am starting to sound like THOMAS from the “Little Engine that Could.” I just have to keep saying, “”I—think—I—can, I—think—I—can.”
Things are getting progressively worse. All Dad wants to do is to get me to the hospital already! I know I don’t belong at home because things are really bad, but I just don’t wanna go to the hospital either. I don’t wanna spend whatever time I have left in the hospital and plus… going to the hospital isn’t the answer either. Even my doctors from California and Indiana prefer me to stay out of the hospital as much as possible. If necessary to go to the hospital, I need to go to a hospital that is able to deal with my complex illness and me. Therefore, even if I had to go to the hospital, these hospitals around my house aren’t even the hospitals that I should be going to. I need to go to California or Indiana because they are the ones able to deal with me. I am so fragile and my disease is so complicated that the wrong move can really make a difference and KILL me.
Doctors don’t like to keep me in the hospital. Despite people thinking that hospitals are the BEST place to be because they can help you, the doctors don’t like to keep me in the hospital because of my immune system and because there are so many infections and illnesses looming in the hospitals. Even when I go for surgeries, the doctors like to get me in and out as soon as possible. I have no immune system and catch basically everything. Due to my illness, everything I get is always ‘magnified’ and since I am so hypersensitive, the simplest thing is such a major deal. A simple cold is like getting the flu to me, so you can just imagine what its like when I get sick… especially now when everyone is getting sick with the flu or something like it. I have no defense mechanisms so if there is any little bug out there… I am surely going to get it. Plus, when I do get something… I can easily die from it. I can’t overcome it like a regular person because my body doesn’t’ recover very easily. I don’t have any reserves and my body is very weak. Plus… I don’t have a lot of medications or antibiotics to choose from to help me because since I take so many pills already (like over 50 per day), everything interacts with everything and therefore it really limits me. You should really see what the doctors go through when I get sick and they have to try to figure out something to give me to help me get better. I am really their worst nightmare.
I haven’t been feeling well lately on top of everything else. With the weather being the way it is and everyone else being sick, I am also sick. So… on top of my usual illnesses, I am battling a cold/virus. It really knocks me down because like I said before… I am really hypersensitive and the simplest thing is a MAJOR thing to me. I am having a lot of mucous in my lungs and it is really difficult to breathe among other symptoms.
I really have to get better and better soon because I leave in 10 days for Indiana. Flying and traveling are hard enough on me as it is, but when I am sick… it is literally going to be impossible. I can’t miss this appointment because I need this transplant so very badly and time is really of the essence. I am rapidly deteriorating and each day is very crucial. It is at the point that I am hanging on barely by a thread and we never know from one day to the next what each day is going to bring or if I am even going to make it. So… I really need to get better and better fast so that I will be able to go. Plus… if I don’t get better, I won’t be able to get the transplant because they won’t give me the transplant if I am considered ‘sick’ with a virus/cold.
When my grandma was getting so very sick, I used to push her and push her to do everything including taking her meds. Right before she passed away, she always used to complain about how she “couldn’t” take her meds. She complained about swallowing and I used to force her to take them all because I knew how much she needed them and how important they were. However, now that I am going through the same thing, I know now how hard it really was on her and how much she really was suffering.
I can barely take my meds anymore. I can’t swallow. I have severe autonomic dysfunction and my esophagus just doesn’t want to swallow anymore. I take over 50 pills daily and it is getting to be impossible. I do take injections as well, but unfortunately, all my meds do not come in an injectable form. So, I have no other choice but to swallow them. Plus… even injections aren’t so great for me because not only do they cause me tremendous pain since I am so hypersensitive, it really has the potential of spreading my illness as well. A simple needle stick is like someone sticking a knife in me. Plus, my disease spreads through ‘trauma.’ The most innocuous touch to a normal person such as a ‘pat’ or something is really traumatic to me. Of course the more traumatic the event… the more potential of the disease spreading. So, even though a needle stick isn’t really considered ‘traumatic’ in comparison to surgery or anything, it still has the potential of spreading my illness.
I really can’t swallow them though. It has been giving me trouble for a while, but I was always able to make do. I found ways such as taking them with “carbonated soda” to take them because the carbonation helped get them down. However, nothing at all helps now. My mom has been staying with me though and helping me because I can’t do it alone. She literally can spend like 20 minutes with me trying to get the pills in me. It is so very difficult. I am so thankful for all that she is doing for me. I can’t thank her enough. I don’t know though… even with her cheering me on and pushing me… how much longer I am going to be able to swallow the pills.
Speaking of meds, I am having trouble with my morphine because I am on such a high dose. I need to take 180 mg. of morphine and since they don’t come in that high dose, I really need to take two 90 mg pills. They are time released and therefore, they come out at certain intervals but they are coming out of both pills at the same time. Unfortunately, the insurance company won’t allow me to have that though. They will only give me a 90 mg, 60 mg, and a 30 mg. Even though it still comes out to 180 mg, it is being released at intervals out of 3 pills. So until the 30 mg is used up… I am basically being overloaded with morphine because I am getting the same amount that I am supposed to get out of 2 pills out of 3 pills since they are time released. You know what I mean? So… since they are coming out of 3 pills, the morphine has been overdosing me and causing even more problems. When we tried explaining this situation to the insurance company and why we need to have two 90 mg pills instead, they still refused to give me the pills. I can’t even afford it on my own because it will be over $1000. So, I am really suffering and risking my life every time I take the 3 pills.
Nebraska has also been calling me to find out if I am coming to see them. I am like a “trophy” to be won. I hate it how doctors like to claim me and keep me… even when they know that they can’t help me because they know that if they do “help” me, they have it MADE. They will be written up in all the journals and everything if they help me. So, doctors don’t like to give me away because they are hoping to have all the glory for themselves.
I hate how doctors would rather keep me than send me to someplace that I am better off going to. Even though Nebraska doesn’t do multivisceral transplants, they keep calling me to come to see them. They do intestinal transplants, but what I require is a multivisceral transplant that incorporates receiving a new stomach, large and small intestine, pancreas, and liver. However, even though they know that I am probably better off going someplace else, they are willing to do the transplant on me and for me to be the ‘first’ one. Even though my transplant is very rare to begin with as not many cases are done (only 6 hospitals perform this operation and only about 1-2 cases are done per hospital), I still don’t want to be the first or be treated like a guinea pig. Plus, the head surgeon that was one of their TOP surgeons left in the past couple of months as well. So why would I want to go there?
So… I have decided to go to Indiana because Indiana is the best place for me. Out of 35 cases that were done last year, Indiana did the most. So, I am hoping that I will get the best care from them and it will be very successful.
However, getting a transplant isn’t a easy thing. So many things go into getting a transplant. I have to have all these tests, shots, vaccines, evaluations, etc. They are like never stopping. Between the shots and vaccines, my body is really acting up. A transplant is very hard on your body. For many people, transplants can mean a cure, but complications can lead to death in some cases.
We also have been working on the plane arrangements because when the call comes in, I will only have a certain amount of time to get to Indiana. As a result, I will have to have a private plane take me. It is going to be very expensive and I don’t know how we are going to afford it. But to be honest, I don’t knowhow we wouldn’t be able to do this because otherwise we would have to live there beforehand and we can’t really do that either.
It could be a long time before I get the transplant and for us to live there beforehand, it would really be hard on us. My dad wouldn’t be able to work and therefore, we wouldn’t have an income and my dad’s business wouldn’t be able to survive. We already don’t know what is going to happen post transplant because I will have to stay there for like 2-3 months and my dad won’t be able to work. We can’t afford to do it before as well. So… we are trying to find a plane company and such to take me when the time comes that the transplant is available because we have to have it all in writing and all set up when we go to Indiana in 10 days. They normally have all their patients living within 4 hours of the hospital so when the call comes in they can get there quickly, but they are willing to have me live at home as long as everything is set up in writing and such. I just hope this all works out, but we are looking at another $14,000 just for the plane.
I feel really bad because while I am hoping to live, I know it entails someone else dying. Due to my size, it can even be a kid that dies because they said that it is very possible to get pediatric organs in me. My dad said that I shouldn’t feel bad because they would have died either way, but I still feel really bad.
I have also spoken to my team in California lately. My GI team in California is very interested to hear what is going to happen in Indiana because they said they are very scared for my life. They know time is really counting down. So… when I go to Indiana, they want me to call them from there and they want me to tell them everything. They are such an amazing team. I wish they were doing the transplant, but unfortunately they aren’t going to be in Indiana.
I am also headed to California Feb. 2nd because I am supposed to be put into a ketamine coma during the interim that we wait for the transplant. So, I only have a little time between Indiana and the time we leave for California to rest and recuperate because traveling takes so much out of me. I need to go to California to have the coma because I need something in the meantime while we wait for the transplant. Even though IU HEALTH has a short turnaround rate for the transplant and we are hoping that I get the transplant fast, it could be awhile. So… since I don’t have time to spare… they are planning on putting me in a ketamine coma to buy some time. It is also supposed to help my underlying neurological disease. Never a dull moment right?
So… I have some busy times ahead. I really hope that things work out because the doctors have already said that if a miracle doesn’t happen, I am not going to make it much longer. I really want to see my next birthday. My birthday is this coming February (the 7th) and I really hope I get to celebrate it at home with my mom. But I don’t know between all the trips and everything if that is going to happen. I am just crossing my fingers that I will be alive to see it because at this rate, we don’t even know if that is going to happen since I am deteriorating so rapidly. I am bleeding internally, I feel like I have a blockage and perforation in my intestine, etc. Yet, the hands are really tied until I receive the transplant, which are not in my hands.
I am also really losing weight too. I have this teddy bear that I sleep with on my bed and my mom keeps joking around with me that I can probably wear its jumper. She probably is right. I only weigh in the 60s, so I don’t really have any weight that I can afford to lose. I am really hanging on by a thread.
Well… I gotta go. I am not feeling well and going to rest. My birthday is coming up and I only have one wish…. To get better. But… I know that is kinda out of my hands. I know that without treatment, I am never going to get better and I know that my family can no longer afford it as well. Therefore, If you can do anything to help facilitate my wish to be able to receive enough funds so I can receive the transplant, surgeries, and continue treatment… I would really appreciate it because I desperately need help since we can’t do this alone anymore. I have tried in the past to raise money, but I am too weak and sick at this point to do it anymore. If you can do anything or spread the word that HELP is needed, I would really appreciate it. I really need someone to takeover the reins for me because it is at the point that I just can’t do it anymore. My body is just too weak. If nothing else, please say a prayer for me because prayers can be powerful also.
Thanks again for all your help. I really appreciate it!!